Brain mets

[Sue]

I had a tiny lesion 5mm last fall and I had stereotactic surgery to remove it. Well it is back in the same place but bigger. We noticed this summer that it had grown but thought it was scar tissue so my Dr. told me to get re-scanned in 8 weeks and now it is 1.3 cm by 2 cm. It is non-encapsulated and some of it may be scar tissue. I have no s/e but some edema. I am going to go to NYU for gamma knife. My Drs. prefer that I get another craniotomy but I have already had 2!! I am so heart broken and feel so hopeless.

[Esther]

I'm so sorry you are faced with this now! I hope everything goes well with you on your new treatment.

The BC mets path has alot of ups and downs....just try to hold on to that. The ups will come, you just need to get through this tough part.

[jojo]

Sue, I totally understand what you are going through. I had a single brain met (I forgot what its original size was), and took gamma knife. About half an year later, it grew back to its original size. I went in for a craniotomy as well as radiation seed implanation. They were pleased to find that the regrown tumor was only half its size we had previously thought (based on brain MRI). I also had edema, which gave me a lot of headaches (literally). I have had one followup MRI and it was clear.

Like Esther, we have a LOT of ups and downs -- just like a wild roller coaster ride!

Hang in there, kiddo :-)

[mamacze]

Dear Sue,

You must feel like you've been punched in the gut.....ugh, to have to deal with this again...
I remember a thread that StephN started where she actually posted pictures of her getting gamma knife..with a smile believe it or not...you should check it out..hang in there please post and let us know the outcome...
Love Kim from CT

[Sue]

I am just beside myself that gamma knife for such a small met did not work. It was only 5mm. I am just not up for a third craniotomy physically I feel fine but emotionally I am drained. I feel if I share this with my close friends and family they will fight me on this issue. Both my oncologist and husband would prefer me to have a third craniotomy but both say they understand. I have been fighting bc for almost 5 1/2 years. Orginal diagnosis of bc and brain mets 4 times!! I feel very alone and very broken hearted for my family.

[jojo]

I really feel for you... the craniotomy is NO fun business!! :-( Actually, scary & sh@^#y, too. May I ask if you had ever had radiation seeds implanted during your craniotomies?

The success result for gamma knife is actually 95%. You & I just so happen to fall in the unlucky 5% group. I asked my rad onc last year why such tumors grow back in the same spot(s).... he said that sometimes micromets surrounding the original tumor may have escaped the gamma knife. Because of this reason, they recommended I go in for a craniotomy.

Sue, it sounds to me as if you are needing to express your feelings with somebody. I really hope that you get a chance to do it so that you would be able to make a decision that you could live with.

It is a horrible feeling to feel alone. You did the right thing, by coming to us here on the boards. Come to us ANYTIME! We are right here with you.

You are welcome to drop me a line anytime: acrobaticfan@yahoo.com

You are in my thoughts & prayers.

[StephN]

Dear Sue,
There are many of us here who have been though a bout or three with brain mets.
I had two to deal with last January and so far Gamma Knife seems to have worked.
Have you had a tumor marker that goes up and down with the mets?? My CEA was an excellent indicator and it is lower than ever now so we are not worrying.

Is you met in a difficult place to treat?? The docs really gave my two brain mets a good blast. The worst was having to take the Decadron, but you know about that one.
Chin up, cookie, and look this thing in the eye. If your docs will radiate it again and that is what you want, then do that.
This is also no one's fault and you must not feel bad that your family has to suffer along with you. That is part of being a "family." It is just that as women we are usally on the giving end.

[Sue]

Thanks for all of your support. I am so heart broken. I suffer silently because others will tell me to quit my job or have a craniotomy and I feel those are my decisions. I know friends and family are only trying to help but it just upsets me more because they do not know our finances nor have they had 2 craniotomies.

My neurosurgeon said to me that he never fully understood how it cancer effected his pts. until it happened in his own family. He said until that point he never had a clue. I appreciate all of your ladies support. I am also in the position that if I tell my husband or my parents things they get upset. Today I asked my husband if he thinks he will remarry.

[mamacze]

Dear Sue,
It seems like you are in the throes of a second health crisis tsunami.....you are overwhelmed and yet hesitant to share with your family who know you best. They are anxious to "fix it" and you are just so tired of any more fixes. It seems like you need a confidente; either a spirituall counselor or counseler who specializes in clients with terminal illnesses. You have so much on your plate; it helps to have an impartial person to sort things out. Call the social worker on the oncology unit of your local hospital; she can certainly refer you to several good counselors. In the meantime, I for one will hold you up in prayer and ask God to bring you peace during this incredibly difficult time in your very precious life.
Love and light,
Kim from CT

[Sue]

Thanks so much to everyone who has offered support. I do see a psychiatrist. I used to go weekly but it is difficult finding a sitter for all of these appts.. The Dr. is helpful and uses the motto one day at a time. He oftern asks me what I need to get thru today? He likes to use the prayer at AA. It all helps. Time helps but my hope is fading.

[StephN]

Dear Sue -
Now that we know a lot more about you and the support you have sought in the past, there are a couple of other questions.

Have you and your docs talked about the success rates of going after a single met for the second time?? I think those odds for success are very high, and that is what you might try to focus on.

Perhaps the main fear is coming from the deep-seated idea that the mets could become numerous all at once and get out of control. (I have had those same thoughts, but try to put them under the carpet!) Whole brain rads are not the most pleasant experience, but I know a couple of women, besides from this board, who have done well with this treatment. They could not drive for 6 months, which was a pain, but one went on disability so had some income to cover bus and taxi fares. The other's hubby drove her and they did not live very far from the clinic.

Wishing for peace of mind to descend and mellow all the pain.

[Sue]

I had WBR a few years ago. I am her2+++. I get Herceptin once every 3 weeks and have been NED elsewhere. It seems every year a single lesion keeps coming back. It was helpful to hear you say that the success rates are better a second time around with gamma knife. I do think once I meet with the Dr. who is going to do the surgery and set a date I will feel a bit better. Limbo I find is the hell and once I am on a path it starts feeling that things are going to be alright.